Folfox Side effects?

Kennytoye

Posts: 2
Joined: Jun 2013

Jun 01, 2013 - 12:57 am

I am wondering and asking who had side effects with folfox 5fu. I am embarking on this wonderful journey of 12 rounds starting June 10th. I just got my Port in. I have a ileostomy and im 27. If you can please share with me what to expect. I would rather hear from my fellow Warriors that actually get blasted than my nurses, doctors and pharmacists. Please share your age, again i'm 27 and i plan to work through the whole thing!

I did Folfox ... The 12 rounds starting at the end of July last week. Everyone will tell you that everyone is different. Here is my experience... My first round... I was very tired after the first infusion... Went home and slept for almost 2 days. I had the 46 hour pump. You can still take a shower with it... Just put it on a small table outside the shower...the line connecting it to you should be long enough for that. You wear it in a fanny pack for the 46 hours. I went back in when the pump finished. the nurses disconnected the pump and I went home. I spent the next 3 days sleeping. I also had a lot of nausea (threw up a few times) and diarrhea (lost count on how many times), no appetite, and my eyes were tearing up constantly. I also could not eat, drink, or hold anything room temp or below. When I tried to drink water from the fridge it felt ligals wallowing charts of glass. Touching anything in the freezer caused shap pains in my finger tips.

The good news... This was the only transfusion that I felt all of these side effects. Yes, I was tired each subsequent transfusion...but no where near as tired as the first. I usually only needed a long nap the day after disconnect of the pump. I learned to deal w/the nausea by taking the rx for nausea even before onset. I dealt with the food issues by supplementing with warm Ensure...warm the chocolate one reminded me of a Frosty from Wendy's. most weeks I napped in the afternoon a few days a week. I did not work during chemo...but I have heard that many do. I was 45 at diagnosis..I am 46 now.

i finished my chemo in mid-January. The only reminder that I have of the chemo experience is Neuropathy. I have the pins and needles feeling in my hands and feet....Constantly. It started at around #7 or #8. It got worse after I finished chemo. I had a hard time sleeping because of the pain. I had to slather Ben gay on my hands and feet to dull down the pain at night even after taking an ambien - 10mg. We tried gabapentin...but I wound up with a rare reaction to it with elevated liver panels. That went away once I stopped the gabapentin. Today, 5 months out from finishing chemo, it is getting better. I can sleep at night without the neuropathy waking me up but I still need a tylenolpm or some other OTC sleep aid.

Oh, i did have to have one tx delayed a week because my WBC did not recover in time. I wound up having to have a Neulasta shot after each disconnect of the pump. I learnthati take Claritin (not Claritin D) starting the day before disconnect and then for 3 days to keep from having the muscle cramps that the Neulasta can cause. The Neulasta shot does burn a little going in...but it is doable. One other thing that I learned is to use that numbing cream that your dr probably prescribed...before the infusion (about an hour beforehand)... Just put a piece of Saran Wrap over top of it and go to infusion. I forgot it twice...it really ups the anxiety of the first needle stick when you forget.

i was able to drive my self dot and from every treatment...although my husband took me to my first one and camwhack about an hour before I was done. Bring something to do...an iPad, a book, you will be ther for 4 to 6 hours. My first one was the longest...they wanted to make sure that I did not have any reaction to any of the meds. The nurses were angels... Tell them anything at all that feels strange or out of the ordinary.

sorry for the book...hope you find some of this useful...you can do this, many of us have been through the Folfox.

Like Alex said much of that is true and everyone is different. My doctor told me that very few patients experienced neuropathy from it, but she was wrong and later told me so. If it starts, tell your doctor before your next infusion. My tummy was often upset, but never threw up. The naseau pills can help you get thru that. Watch the cold no matter where you are, car, grocery store, malls, any air conditioning can bother you. If you go to a restaurant and you get water, make sure it is tap water with "no ice" as they always put that in. Taking Vit B6 is a good thing to combat the neuropathy but please let your doctor know exactly what you are taking, including vitamins as some things can interfer with your treatment. You will either experience the runs or constipation so be prepared for that. Mouth sores are also an issue and you can ask your oncologist for a prescription for Magic Mouth Wash will help. Also, make sure you get some lidocaine for the port access area. It's a cream that you put on the port an hour before they access it for treatment. It's good that you are asking questions, as the more you ask, you can get some great responses from others. Good luck in your treatment.

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